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Feeding tube, maybe [Jun. 30th, 2006|11:19 pm]

She wakes up every once in a while and proclaims indignantly that she wasn't asleep. When she's awake she's more coherent than was often the case in past hospitalizations: the bladder infections made talking difficult for hours to days. She'd fight her way up from "Ow" to single words, to short sentences where she often couldn't remember the crucial word, to complete short sentences, to normal communication.

Today though, she was talking about a nurse who reminded her of our friend Lisa, and said this: "I told the Lisa-like woman (and it's true) that my muscle spasms were like hot wires applied to my legs, and you can imagine how that feels; and she said 'Yes,' and I was grateful for the empathy. I'll have to remember that simile. It's an effective description."

With long pauses between phrases, sometimes, and in a very weak voice; but as you can see never losing her train of thought. Then she went to sleep.

She sleeps a lot, sometimes drifting off in the middle of a sentence. She may be getting a stronger dose of pain medication than she had in the nursing home, or it may be that her new wound is sapping her strength. (It's in her thigh near her groin. It wasn't there a month ago, and now it's deep enough that the doctor at the wound clinic could put his finger in far enough to feel her bone, and her femoral artery. So they kept her at the hospital.) They may increase the dose of muscle relaxant in her infusion pump, which delivers small doses of muscle relaxants and morphine directly to her spinal cord. That might mean they can lower the amount of oral painkillers.

As always, I don't know if I'm sitting at her death bed, if this is the beginning of another, lower plateau on the long descent, or if she will recover to the previous bleak plateau.

Meanwhile, her nursing home is blaming her computer equipment for tripping a circuit breaker last weekend. Since it's all DC equipment, powered by transformers that can hardly take more power than three 60-watt bulbs, that seems unlikely to me. The nursing home is also upset about her head-controlled mouse, which involves a camera that senses a 1/4-inch metallic dot glued to her glasses, and moves the cursor as she moves her head. "Photographic equipment" is not allowed, they say, because it violates patient privacy. And I must bring her no more DVDs, since they offend her roommate.

We've asked the hospital to inquire about other nursing homes, getting so far three refusals. I imagine that will be the pattern: Marsha's a Medicaid patient with multiple sclerosis, diabetes, really bad pressure sores, and probably a bone infection. It can't be profitable to have her as a patient. So we're likely stuck with her old nursing home.

I need to decide how hard to keep fighting to get them to turn her every two hours. Pressure sores happen to people who can't move because the circulation of the blood gets cut off from the parts you're lying on, and the tissue dies. Turning every two hours is the standardly cited remedy, so that no part has the circulation cut off for too long. I have no idea whether there are any institutions that actually do this. Certainly the nursing home didn't (saying Marsha refused to be turned) The hospital isn't turning her every two hours either – and if the hospital where the wound clinic is located doesn't turn her every two hours, why should a nursing home?

I am not good at this kind of struggle, at being a firebrand; and more and more I suspect that in fact no one actually wants sick old people with pressure sores to be turned properly (no one including, possibly, the sick old people); that the turn-every-two-hours rule is known by all never to happen; that those who cite it simply don't want it to be their fault that the turning doesn't happen. I don't exclude myself here; I don't know whether my growing reluctance to try to move mountains is a sensible acknowledgment of how low my reserves of energy are, or cowardice. Maybe there's not so much difference.

Later: I've talked to one of her doctors, who says that the wounds are not going to heal unless she gets a feeding tube installed in her stomach. (Draining wounds take away lots of protein.) But Marsha was reluctant. I've talked to her a little about it, and I think I can probably convince her to go ahead. I hope to heaven and hell I'm doing the right thing. We'll talk again in the morning.

[User Picture]From: luguvalium
2006-07-01 07:44 am (UTC)
I wish I knew words that would comfort you or Marsha.

Hang in there.
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[User Picture]From: northlighthero
2006-07-01 02:37 pm (UTC)

Treading carefully

Hello, Dear One;

Sounds like you and Marsha have your hands full. It's none of my business, and I have a reputation for butting in ... (and fill in as many disclaimers as you like) ...

and I have a hard question for you:

What does Marsha want to do here? What is the result she is looking for? What are her choices?

Is 'healing this deep wound' on the path to life? or just a momentary delay in a long decline? or, as you point out, a possible recovery to the most recent bleak plateau? Which of these results would Marsha embrace? Are there results she would actively choose to skip?

This may not be relevant -- your mileage and Marsha's may vary, and my mom was much older ... but it's a voice from a viewpoint that 'we-the-healthy' may not often consider:

When my mother was nearing the end of her life, with many body systems working poorly if at all, and many long-loved skills and abilities waning, at one point she thanked us all for our solicitous care, and ended the sentence with "But."

"But. I want you to realize that if you carefully prevent every possible easy death, then I'll eventually have to die a hard one."

The ensuing conversation brought home to us the fact that, for medical people, death is the enemy and must by "prevented". But in fact, all roads lead to death and the ultimate outcome of every decision is that, sooner or later, the patient will die.

So will we all.

What I'm hearing (which may NOT be what you're saying) in your post sounds like it might be that

the doctors want to prevent death at all costs, even adding the feeding tube that Marsha is reluctant to accept ...

and it might be that the nursing home is willing to accept death rather than try to keep their patients comfortable and engaged in life (hence the struggle over the computer and DVDs).

And it sounds like you and Marsha are there in the middle, trying to see what's 'the right thing' for this particular patient in the middle of this particular situation.

Which is desperately hard work for both of you, the beloved patient and the beloved helpmeet.

I dinna think your growing reluctance to move mountains, by the way, must be put down to a choice of 'low energy' or 'cowardice' -- the situation is far too complex for only these two self-judging choices.

How can we support you here? How can we support Marsha here?

I know how far short of 'real help' the words of distant friends can be -- please know anyway that you are deeply Beloved.


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[User Picture]From: angelweed
2006-07-02 02:17 am (UTC)

Re: Treading carefully

I have a hard question for you:

What does Marsha want to do here? What is the result she is looking for? What are her choices?

There's a Lou Reed song Marsha likes, I think on Magic and Loss, with the refrain "He wanted all of it. Not just some of it. All of it." That's what Marsha wants – all of it, not just some of it, all of it. Of course we none of us can have all of it; but Marsha does better than anybody I know at picking herself up after a loss and getting on with her life. She's had a lot of practice.

In the current situation her choices are: (1) a comfortable and fairly swift death with palliative care (which her doctor reports she rejected Thursday night, as she has many times before); (2) a more lingering and possibly no less comfortable death with neither palliative care nor the feeding tube; and (3) the feeding tube. (The reason palliative care means fast death is that Medicare won't pay for intravenous antibiotics for people on hospice-type care, and the proximate cause of Marsha's death will almost certainly be an infection.)

The result Marsha would like is (4) long life and healed pressure sores without the feeding tube. I don't think that's possible, and that's what I convinced Marsha of. What I don't know is how much of a shock to her system it will be to insert the stomach tube; this may be a bad mistake, giving her (5) a short or a long life even more horribly debilitated than she is now. But more debility is coming down the pike anyway, quickly or slowly, and the doctors portray the feeding tube as quite minor. I think it's the right gamble. (For Marsha. Me, I'd have given up and taken palliative care years ago.)

sounds like it might be that ... the doctors want to prevent death at all costs

Not in this case. It's not clear to me whether they presented the feeding tube or palliative care first, but certainly they gave her both alternatives.

When she comes into a hospital unconscious or incoherent (as usually happens with infections), someone will corner me and ask whether Marsha has a DNR (Do Not Resuscitate order). That's understandable, and I can't resent it; they're extrapolating from the gurney to her whole life. But Marsha doesn't want a DNR; she wants to be kept alive in circumstances that would horrify me. She draws the line at major surgery; other than that, anything goes.

How can we support you here? How can we support Marsha here?

Let me get back to you on that.

I know how far short of 'real help' the words of distant friends can be

But still a help. Thank you.
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[User Picture]From: northlighthero
2006-07-02 06:22 pm (UTC)

Awestruck, and a little contrite

Hello, Dear One;

I stand in awe and gratitude for your amazingly gracious and grace-filled response. I see your compassion for me -- how you can have compassion for yet another intruding misunderstanding one, when so much is going on, I can't imagine, but I see you do.

I hope you can feel my compassion and love for you, too, even when I've jumped to conclusions (even when they may be the same conclusions you've grown weary of refuting).

Also I see, reflected in what you say, how much of my 'hard questions' stance is a reflection of the work I do in Hospice. And calls into question yet again the way that I listen, or don't listen, to the work people are doing around the impending departure of their beloved parent, spouse, sib, or child.

Thank you for reminding me that 'what it looks like to me' is so often conditioned by 'what I saw yesterday' and not what is actually before me.

Thank you for sharing with us the beautiful clarity that you have, and that Marsha has, around what choices she will make and what her goals are.

Your courage and steadfastness are a blessing to witness, dear brother.

Do get back to me on 'how can we support you' -- because I do choose that you be supported.

Many blessings of light and love, laughter and courage, depth and knowledge to you both.

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[User Picture]From: angelweed
2006-07-04 12:27 am (UTC)

Re: Awestruck, and a little contrite

Thank you for reminding me that 'what it looks like to me' is so often conditioned by 'what I saw yesterday' and not what is actually before me.

Likewise. Your questions did me a service along those lines: they prompted me to go over some end-of-life questions with Marsha again, and I got clarity that I hadn't had before. We had previously talked about this while Terri Schiavo was all over the TV. I believed the doctors who said she had no cognitive function, and Marsha believed the parents who thought she was still there. So the upshot for me, at the time, was that Marsha wanted to be kept alive no matter what the docs said.

What we clarified the other night is that if the docs are saying "persistent vegetative state" and I don't think Marsha's there, then she wants the life support turned off. But she wants both those judgments, made independently.

So thank you!
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